So, after my review of The Amazing Technicolour Pyjama Therepy, I thought I’d share a few things that have made me think – after all, such a book is only any use if it changes something in you.
Perhaps some of these things are issues I should have ‘dealt with’ by now. But grief and loss are like an onion, there are many many layers. Just when you come to terms with one aspect, another is uncovered and needs facing. The length of the situation also means strategies that have worked, no longer do, or things you had worked through need taking out and looking at again as time gives them a different hue.
There is much in this book that is thought provoking and challenging, these are some of the ones that hit me where I’m at, some of which I tweeted the quotes from.
“Look on managing your illness as useful work” (p25) That is all I can manage, however different I might like it to be – and that has to be OK. Somehow, I have to find a way to be me, this new, alien, different me, outside of my role – whichever role that is. What I can do now is different to what I could do.
That brings a huge sense of loss, and can go on doing so as those losses are re-enforced, or newly discovered for the first time. I think new losses will be realised as life with chronic illness goes on, but when we come to them the loss has to be faced, stared straight in the eye, acknowledged and dealt with. That doesn’t necessarily meant that you ‘get over’ it, but you have to find a way of living with, or else the pain becomes crippling – and were back to the Pile Under the Carpet again!
Life, reality, what I can and can’t do are very different; they look and feel so far from where I once was – a life I was quite happy with. Somehow, this life has to become as useful and pleasurable.
So, I know I only function well for 30-45 minutes, beyond that I’m gone. I know I’m better in the mornings, I don’t do afternoons at all (I sleep for a good couple of hours and if I don’t it’s not good) and I’m not much better in the mornings. SO I deal in small chunks and I do it early. What isn’t done by 11ish will not get done that day. That is what I have learnt in being an expert on me 🙂
(Oh and try telling the DWP that managing your illness is a full-time job!!)
“love and forgiveness is costly because it means letting go of my version of the past” (p95) for most of us our past was precious. We were having a whale of a time until chronic illness struck. Being chronically ill is not generally a reaction to being miserable, or a pleasant escape from a life we were hating.
So, chronic illness brings up many emotions: guilt, anger, resentment, self-pity, bitterness, loss of confidence, frustration and fear are mentioned in the book. Yup! And some…
But those emotions can easily become misdirected. So much is lost, but am I blaming the wrong person? Invisible illness brings with it a whole new set of possible misunderstandings – but they’re not necessarily anyone’s fault. Calm explanation may be better than exploding – but that was never my strong point 😉
I need to take time to stare those losses in the face, acknowledge them, feel the pain; from then a new foundation can be built – not on the past, but the future.
“God is always on the move and he wants us to come too” (p117) has to speak in to that. Whatever I have lost, there is a tomorrow. Maybe not the one I envisaged or might have chosen, but one that God is in nonetheless – and he is still going to be working in and through me there.
“I should work at meeting my own daily challenges, not peek over the fence at my past or my neighbour” (p121) that might be far healthier! My life is my life, only I am responsible for it. This is how it is, and I am the only person that can live with it. The past has gone, it would have anyway. I can only deal with what is before me now.
“Worship is about God surely. It’s about putting him first, focussing on him and clearing a space from other pursuits and concerns to consider his beauty. It isn’t about how I feel, where I am or what I do with my body.” (p179) This is a biggie. Having been a Presbyter in Circuit work, worship was the bread and butter of my life. It challenged and inspired me – but I was also responsible for how I worshipped. So much of my identity was tied up in worship and how it was led. Now I have to find a way to engage with worship that works for me. I can’t sing, sitting is not always comfortable, my attention span is assaulted – your average act of worship is difficult for me ‘get on board with’.
BUT that is all about me. What about God? Where is his ability to meet me where I am?
Wake up call – worship is not about me, or even what I can and can’t do. It is a meeting with the holy God, a place of encounter, of healing (in it’s broadest sense), of finding peace and being challenged; of hearing from the God who is far bigger than anything I can or can’t do.
And then there are some things that are useful for others to know, things I’d like you to know, not to moan, but to perhaps help you to understand me and where I’m at better:
“The sick are exiled into a strange and scary place, leaving behind great chunks of their previous way of life. It’s a lonely transition” (p2) I cannot emphaise enough the truth of this. However ‘sorted’ I may come across, or not, I am in an incredibly lonely place. However long I have been ill, the path goes on, and each twist and turn can be scary. Each day is new and I am exiled in a land not of my choosing.
“Illness related fatigue is nothing like healthy tiredness. It’s like a very heavy wet blanket pulled over your head that squashes you flat” (p37) This is not just ‘being tired’ or in need of a rest. This is an all consuming exhaustion that makes your head spin and your body shake. Accompanying that is the inability to think straight, never mind make sensible decisions! A sit down doesn’t make it better, neither necessarily does just sleep. It is not possible to imagine or understand if you haven’t been there.This fatigue goes hand in hand with so much chronic illness, and adds to the delight of trying to cope. Dealing with illness is hard, dealing with the practicalities are energy sapping and time consuming – doing it when you are already exhausted can be mind-blowingly difficult. I’ve linked to this before, but it explains this kind of fatigue so well.
“It’s painful to feel overlooked or misunderstood by members of your church” (p189) Sadly this is also a great pain and burden. The place you want to belong, sometimes feels like the place you are most rejected or sidelined. It is the place I should have so much to offer, and yet I can’t. Not withstanding what I have said above about worship, church too can be a place of exile.
These things are particularly hard, when you thought people understood, only to realise again that they don’t. Why should they? They are not walking in my shoes, they have their own with their own pinches.
But unless we talk and keep on talking, how will any of us know?
These are just some of the nuggets this book contains. I’m sure if I read it again different things will jump out. There is more I could say, but why not read it and see what it has to say to you.